any problems with Carotid arteries related to Chiari

[Guest guest]

I have been wondering if anyone has had problems related to their Carotid

arteries, like Carotid-Cavernous fistula's? I have been doing some research

after having my first stress test and the pieces of the puzzle are kind of

fitting together. First of all here is some background info.

I was finally diagnosed and had craniotomy in 9/02 after having severe

papilledma but CT scans thought to be normal variant, 9mm herniation. Before

having surgery the neuro had diagnosed me with idiopathic PTC since I was not

extreme overweight and didn't really fit criteria. I had an MRI but the

radiologist totally missed the 9mm herniation. I also had 4th, 5th,6th, and

some other nerve palsy's of the eyes, diplopia, tinnitus, visual obscurations,

large blind spots in visual fields and nystagmus. Three months later headaches,

double vision, visual obscurations, etc... returned and a Codman VP shunt was

placed. About 3 months headaches returned and tried adjusting the shunt but to

no avail nothing but nsg said that CT looked fine. Nsg did not cauterize the

lobes and did not diagnose me with Ehlers Danlos, through all the surgeries

getting back into my regular excercise routine in combo with having the Ehlers

Danlos and not knowing it he told me I had Fibromyalgia and my eyes were

beginning to swell off and on. So he said they were probably ocular migraines.

I started having chest pain so severe that I went to the ER for but they just

did an EKG and said that all was fine and blood work and sent me home. So four

years later, I go to TCI and find out that I have EDS, and Tetherd Cord, and

that my shunt has collapsed my left ventricle and I will need a revision soon,

and suspect cranial settling. Because of insurance I could not schedule my

surgery. So back to NC and then I see Dr. Rosner this time and he tells me that

I need a tilt table test and Urodynamics which I failed the tilt table within

10-15 min. before the dye, and the Urodynamics for POS for neurogenic bladder.

He tells me because the nsg had never cauterized my tonsils that I should

definitely have a tonsilectomy. A couple of months later I had to go to the ER

at Duke for sever headache. Every time I stood up my head was killing me and I

only felt better lying down so I knew it was my shunt. Yet when I went to Duke

and sat for 17 hours they said after a CT scan that all was well, even after I

gave them the clinical notes from TCI. They didn't even bother to give me as

much as a Tylenol. Yet they did give me an appt. for two months out with my

nsg. there. After seeing him, I convinced him to order a shunt patency test

another three months out. Again, a week before the shunt patency test I ended

up in the ER with a severe headache this time it took lots of pain meds to get

rid of and then I was in bed for a week solid only to go to the bathroom. I

went in for my test and my shunt was draining straight into my stomach and was

not circulating around my brain at all. I felt better for about a month. They

had already done the flow study before I started feeling bad about a week before

I started feeling bad. Anyway, this whole time I have had chest pain. I

started thinking yesturday after having my stress test. On the latter part of

the test, on the highest incline my blood pressure had gotten to 220/110 and my

pulse was before the end 160. My pulse rate is always high. My heart is having

to fight my 15mm herniation. After the test I had an extreme headache like I

have had before in my neck, on the sides. I have had my Dr. at my pain clinic

try and do trigger poin injections there before but it is never in the right

spot. What I am wondering is if this is my carotid artery that is hurting me

from such high pressure from all of this. I read about these (CCFs) and they

would explain my swollen eyes and the pressure behind them and why I have

constant double vision right now. They told me that it was from damage to my

brain stem. Also I do hear swooshing sounds to my blood pressure sometimes when

I have a headache which would be pulsatile. Does anyone know anything about

problems with the carotid artery in relations to ACM? I am wearing a Halter

monitor until this afternoon and the cardiologist is talking about putting me on

a beta blocker but I want to make sure that this is all it is. I don't feel

that confident sometimes with my MRI considering they missed my chiari the first

time and I had to find it myselft and it was 9mm and my brainstem was kinked.

Thanks, Beth